Having received a questionnaire from us or browsing through this website, you might ask yourself one or several of the following questions:
Why should I participate in the SCCSS?
By completing the questionnaire that you received, you contribute important information on the health and quality of life of former childhood cancer patients.
This information is essential for achieving improvements in cancer therapies, follow-up care, and policy interventions.
Nowadays, everything is fine with me. Should I still participate in the SCCSS?
For us, it is important to know how all former patients are doing nowadays. This helps us assess the need for improved cancer therapies, follow-up care, and policy interventions.
That is why we ask you to fill in the questionnaire also if you do not face any health problems or other limitations in your everyday life nowadays.
I did not receive a questionnaire, but would like to join the study. Can I?
Certain criteria must be fulfilled for you to be able to join. You must have been diagnosed with cancer before the age of 20 years in Switzerland. Furthermore, at least 5 years must have passed since your cancer diagnosis.
We draw on the Childhood Cancer Registry to identify all those eligible for study participation. If you think that you should be part of the study, please send an email to firstname.lastname@example.org or use the contact form to contact us.
Why did you contact me as a brother / sister of a former childhood cancer patient?
We compare the health and quality of life of former childhood cancer patients to their siblings, who did not have cancer. Differences between former patients and their siblings helps us to identify late effects that childhood cancer and its treatment may have.
Will I be paid for joining the study?
Unfortunately, we are in no position to pay for your participation. Non-profit organizations fund our work; we do not receive any funding from commercial sources. We greatly appreciate the time you take for contributing to the study!
Why does the questionnaire contain so many questions?
Late effects of childhood cancer and its treatment may affect many aspects of life and we want to obtain a picture as complete as possible. Therefore, the questionnaire is quite comprehensive.
Why are there also questions on education, work, and financial situation? And even on sexuality and family life?
This are important aspects of all our lives. We would like to find out if former childhood cancer patients face any disadvantages or needs for support in these areas.
Why are we as parents asked to answer questions about our education, work, and income?
We would like to examine how the parents’ social background affects the late effects that childhood cancer patients may develop later in life. Research on other diseases suggests that social background may play an important role.
What do I do if I cannot or do not want to answer certain questions?
We fully understand that there are questions that you cannot or do not want to answer because some events in the past are difficult to remember or you feel that some questions are too intimate. If you decide to skip a question, please continue with the next ones that you feel comfortable with.
Why do I receive a follow-up questionnaire after having already completed the baseline questionnaire?
Late effects of childhood cancer and its treatment may occur many years after the initial diagnosis. They may also worsen or disappear. Learning more about when late effects occur and how they change over the life course is thus important for improving therapies, follow-up care, and policy interventions.
What happens to the information that I provided? And how do you protect it?
In processing, storing, and analyzing the information, we strictly follow Swiss legal regulations and data protection laws.
Your responses are entered into a database set-up specifically for that purpose. Your name and address are kept separate in a database reserved for administrative purposes. Both databases fulfil high safety standards. Access to them is restricted to the SCCSS team, with no team member having access to both your name / address and your responses.
Provided that they fulfil strict requirements, the SCCSS team may provide researchers with selected, anonymized data needed to answer specific research questions. As a result, researchers do not know which individuals contributed information to the SCCSS. Research findings – irrespective of where and how they are communicated – can never be traced to the individuals who contributed the data.
Moreover, everybody involved in processing, storing, or analyzing information signs an agreement to maintain confidentiality on all information accessible to them.
Do you have other questions? Please do not hesitate to contact us!